“I can tell that you are really strong and that you can take it,” she said. “So I’m going to tell you like it is.”
This is the first thing a Friedreich’s ataxia parent said to me when we first met. She had lost her son to FA a few years earlier, and she wanted to prepare me for what she knew lies ahead. In my head, I said to myself, “That’s right! I am strong! I can do this!” I listened to her stories and advice, and I took a lot of notes. I asked her questions and mentally prepared myself for the next steps I would need to take to become an advocate for my daughter. I didn’t break down. I didn’t cry. I actually felt myself becoming stronger just by holding it together through our meeting.
But a few days after we met, I was having trouble getting out of the bed. I found myself breaking down and sobbing at random times throughout the day. I actually snapped and lashed out at several of my friends who reached out to see how I was doing. Clearly, I was not as strong as I had thought. I was an emotional wreck.
The thing is, the other FA mom seemed tired, tough, and battle-worn. She had seen the worst and survived, but I could tell it had changed and shaped her into someone who has armor on all the time. It was as though I were looking into a crystal ball and seeing myself as a woman who was angry and tough. And that’s not who I want to be.
I am an extremely sensitive person, and I enjoy feeling my emotions. One of my friends once told me she thinks crying is my spiritual gift. I think she meant it as a compliment. My children and husband love to make fun of me because I emote over commercials, books, podcasts, TV shows, and movies. Weddings, baby baptisms, and funerals require me to be equipped with a box of tissues. Basically, I am an unapologetic mushy mess of feelings.
My daughter’s diagnosis of Friedreich’s ataxia hasn’t changed that about me. But I am learning that I have to dial it down a bit. If I give in to feelings of depression or fear about her future, sadness and worry would monopolize every moment of the day. There is no time for that!
What I have learned to do is to put on what I call my “candy shell.” This is what gets me through trips to the grocery store and medical appointments. My candy shell protects me when someone asks how my daughter is doing, and I want to lash out at them. My candy shell gives me a layer of apathy when people stare as my daughter spills her drink in a restaurant or falls down in the aisle at Target. It keeps me from tearing up every day when she climbs out of my car and stumbles to her school, too stubborn to use a mobility aid.
But the good thing about the candy shell is that it can melt away when it needs to. When a true friend reaches out with real care and concern, the shell goes away so that I can mourn with my friend. The candy shell can melt with a hug from my husband as he shows me that we are in this together. And it can melt away so I can have the empathy I need to deal with my daughter’s emotional and physical needs as the FA causes her body to betray her on a daily basis.
I am going to call this column “Candy Shell Life.” I hope you enjoy my perspective on parenting a child with FA. I hope you feel less alone and more supported through my words. We are all in this together, strong as nails when we need to be, but kind and sensitive as we strive to do all we can to make our kids’ lives the best they can be.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.